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How is the decline in % important when your viral load is suppressed and CD4 count in normal range? - matt

That is also my heart burning question. Thanks OP for posting this -

So, my doc says that declining % is a good indication of one's immune system is slowly declining. I had a doc visit happened and I have found out that my CD4 is around 460 and viral load is 8/9k which is steady and has been that way for last couple of years but my percentage is declining. My percentage is @ 16%. I have another lab coming up in few months and we can figure out more to see what's going on with my health. FYI, I am not on meds.

So, lower cd4 does count, right? If someone has higher cd4 count lets say around 500 and viral load is under 10k, it still doesn't matter because of lower percentage. OP is a good example here. So, questions is how much "percentage" matter?

Most of us would get to worry about point 3 only once we achieve undetectable status, first. The fact that the OP's absolute CD4 is trending up is reassuring. I'd look at trends over years, not so close together.

I definitely have higher CD4 counts on my wish list (like many here). However, I tend to side with those thinking "i'm already doing my part with meds, why worry over something i otherwise have no control over?"

I defer to the much older and wisened veterans of this board on CD4 monitoring.

@Since2005: Current consensus is to start ART's sooner to reduce reservoir. Those with baseline CD4's <500 have decreased overall survival. Why is your doc waiting?

Please do not provide data that you can not support or should I say please provide data with research link, etc. before you post anything out there not just ‘your understanding’. This can be very misleading to lots of newcomers

@Since2005: Current consensus is to start ART's sooner to reduce reservoir. Those with baseline CD4's <500 have decreased overall survival. Why is your doc waiting?

Few points here for you. Again, please provide information that you can back up with data. First off, when do find out the ART is helpful to reduce reservoir for regular patient? Study had showed that though it worked for ‘some’ elite controller, for the majority of patients, it doesn't work. Please see this article. “Current antiretroviral medications for the treatment of HIV work by targeting the actively replicating form of HIV – but not this inactive form.” I personally would not care anything from “FOX News” but they were talking about a doctor for John Hopkinshttp://www.foxnews.com/health/2013/10/24/major-setback-for-aids-cure-study-finds-reservoir-hidden-hiv-bigger-than-once/

The second part of your question: “Why doctor is waiting?” …. First of , he is not , he has recommended to consider meds and also to look at more lab results. Please emphasis the word “consider” and I am. I would wait couple of labs, see the trend if trend is downwards and nearing in 350 with a high viral load, then I would absolutely do that. But to answer your question, why a doctor wouldn’t?? Do you know majority of doctors recommend starting meds at CD4 350 @ high viral load.

Please look at this article, it states that doctors recommend patient to start ‘considering’ meds when CD4>500 count. Please be mindful that this BIII meaning moderate recommendation with expert opinion (meaning not supporting data)

I just did not get your point, you did not know my lab history, you just knew my lab was above 460 with 8/9k viral load and you assumed its time for me to take meds and why a doctor would not ask. My lab history has always been ( well last couple of years that I know of) higher 450 to higher 550 and 2-9k viral load with CD4 percentage between 16 to 25. Since my last lab result has lower CD4 count (comparing to other lab results) and lower percentage, I am considering taking meds (and I have few in my mind) after next “few” labs and if its continuously downwards and hit under 350 with high viral load and low percentage, then you got it, but other than that, its about monitoring the lab results, and watching out the trends. So, yes that is why I am not on meds if that makes sense by now. All in all, there is not a set guidelines starting meds, it depends on other issues like age, pregnancy, and/or if someone has kidney, liver o any other issues etc. You just have to talk with doctor and figure that out.

I am also wondering why (not how) CD4 percentage goes down, If anyone has any article to share about CD4 percentage and why it is an effective measurement tool of one’s immune health, we can learn and get benefit from knowing/reading about it.

personally, I had hiv/aids for something like 20 yrs before I ever asked about my percentage. I was dealing with all this back in the days when they wasn't even a viral load test, so not knowing a percentage wasn't that unusual. These days, I think, the percentage is still more of a diagnostic tool for an AIDS diagnosis than anything else. Maybe with being undetectable and having such a good cd4 count (double what I have LOL), you should just do what I and others do - ignore the percentage.

Logged

leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

ON meds: percentage has little clinical relevance, but easier to follow since once CD4 is higher a minor change has a larger impact on numerical count, so at higher CD4 level the counts changes are such that if you would pay attention to that you'd get crazy (*)

OFF meds: percentage may have clinical relevance. Dr Galland, has posted once that if a patient was presenting with a % below 14 , he would equate that with a patient presenting at CD4 count =200 (regardless of the actual count)Of note: 16% is NOT 14%... Since there is a plateau between 20 and 14% and a cliff below 14... So 16 % is not a RED danger zone, but 14%, yes (again OFF meds)

(*) for example my CD4 went up +700 then down 400 and I pay no attention because always > 1000.

Back to the OP: if you admit that things can go UP, you have to admit also that sometimes they have to go down, otherwise, you would end up with CD4 = 10.000 ;-)

I would be happy to provide links to the relevance of % when OFF meds, but this is not the topic of this thread

Please do not provide data that you can not support or should I say please provide data with research link, etc. before you post anything out there not just ‘your understanding’. This can be very misleading to lots of newcomers

Few points here for you. Again, please provide information that you can back up with data. First off, when do find out the ART is helpful to reduce reservoir for regular patient? ...

Very defensive. I merely asked out of your long-term well-being. No more. No less.

I never said that ART's reduce reservoir (although that would be nice, if proven). I said simply it has been associated. Higher CD4 count and higher CD4/CD8 ratios appear to be associated with lower reservoirs.

The second part of your question: “Why doctor is waiting?” …. First of , he is not , he has recommended to consider meds and also to look at more lab results. Please emphasis the word “consider” and I am. I would wait couple of labs, see the trend if trend is downwards and nearing in 350 with a high viral load, then I would absolutely do that. But to answer your question, why a doctor wouldn’t?? Do you know majority of doctors recommend starting meds at CD4 350 @ high viral load.

I based my statement on the 500 cutoff from newer data as of 12/2013. Starting ART's above this cutoff has been associated with longer overall survival.

There are enough data accumulating that even baseline 350-500 have worse survival than >500. More and more data are accumulating on not waiting and starting therapies earlier. This study comes from NEJM, one of the most widely respected medical journals.

A doctor once told a group of residents: "If you follow guidelines blindly, you're a bad doctor." He wrote the guidelines for his field.

Old guidelines don't include newer data that have accumulated since their publications. Guidelines get updated. The ones for HIV/AIDS are about due. I expect newer guidelines will begin to get more and more aggressive on when to start ART's.

Very defensive. I merely asked out of your long-term well-being. No more. No less..

Yes you have! 200 is the number not 300. You can just come and post numbers on people without backing up data just because you want one’s long term well-being. There are lots of new people come here and this is misrepresentation. That’s all I was pointing out!

@Since2005: Current consensus is to start ART's sooner to reduce reservoir.

I can’t believe I had to re-publish this again. Please look at my link that I have posted about ART and reservoir issues.

@Xinyuan please understand you can’t just suggest someone something without knowing the background, history etc. Doctors are divided themselves when to start HAART. In Europe, its a standard practice to start meds @350 where in USA below 500 (consideration) below 350 (recommended). In New York, some doctor says to start right after the diagnosis. We can debate on ‘when to start meds’ just like as doctors themselves do. And trust me we have done that in this forum many many times. But, this is not the thread for it.

Again, about my doctor issue, depending on next lab results, (if my number goes up will not start meds and if my numbers continues to go down (along with the percentage), will start meds. Hope this clears it up.

@ OP sorry, if this thread got hijacked a bit. Back to declining percentage. It turns out that there may be a slightly difference on CD4 declining issues depending on if someone is on /off meds (I do not understand why though) but, let us get back to that focus.

Conclusion: "despite finding some associations between CD4/CD4% discordancy and immunological and clinical response to HAART, these effects were, on the whole, relatively small, suggesting that it is sufficient to simply monitor (and act upon) the CD4 count when assessing patient prognosis"

CD4 count and CD4% will be out of sorts on/soon after seroconversion, so your downward trend in CD4% cannot be relied upon as accurate. Unless you have a pre-HIV baseline CD4 figs you cannot say what is normal for you. Your CD4 counts are all broadly speaking in the same range, and your CD4 counts within the expected range for your CD4 count (as per Figure 1 in the paper linked to above, in the Results section).

Before antiretrovirals, higher CD4 count and CD% are important, because they relate to the risk of opportunistic infections. On antiretrovirals, there really is no decent research to say a falling (or rising) CD4 count or CD4% matters that much provided it is over 200/16%. Other tests are likely to be more important. The system used in veteran healthcare for HIV monitoring includes CD4 count but not CD4% as one of several factors. You can read about them all here in this PDF:

Please read my previous posts. You will realize my background and expertise. I am forced to read studies and findings at a far different level than a lay person.

Telling me about these issues and debates among doctors. It's like an experienced armchair scientist explaining particle physics to a CERN physicist. Unless you're a physician yourself, don't generalize what I do and do not know.

I won't respond any further, since our exchanges are hijacking this thread.

Reading your own article that you have provided, here is what I have surmised:

· “Not enough evidence to show starting HAART early benefits individual patients”· WHO changing the guidelines because it reduces the risk of transmission among others · “START (Strategic Timing of Antiretroviral Treatment) is still awaited”

There is not enough evidence to show that starting HAART early helps a patients “Individually”.

We have to wait till START data comes out and see what's the results, until then please refrain from advising other to go on meds because you are a medical expert around the issue.

My greatest fear is some doctors put a patient in HAART because they think is it helps to reduce the risk of transmission plus patients do get better. They both are true but there are not enough evidences to show that Starting HAART early helps a patient individually. This is “still now just expert's opinion”.

Since when did you find out about? Starting “ART's sooner to reduce reservoir”

I don't understand the mindset of ‘oh okay, you have got below 500 this time, and may be you should be on meds NOW. How about wait out and see ‘what the trends are’ specially when there are NO REAL evidences to show that starting HAART early is helpful for a patient.

When START results comes out, we can all put this to an end but till then we should not make a “clear" judgment call as to asking/advising others when to start meds based on one result set rather than looking at other important issues like trends, age, exponential viral load, kidney/liver issues etc. etc.

So Here are my reasoning - Reading your own article that you have provided, here is what I have surmised:

· “Not enough evidence to show starting HAART early benefits individual patients”· WHO changing the guidelines because it reduces the risk of transmission among others · “START (Strategic Timing of Antiretroviral Treatment) is still awaited”

There is not enough evidence to show that starting HAART early helps a patients “Individually”.

We have to wait till START data comes out and see what's the results, until then please refrain from advising other to go on meds because you are a medical expert around the issue.

My greatest fear is some doctors put a patient in HAART because they think is it helps to reduce the risk of transmission plus patients do get better. They both are true but there are not enough evidences to show that Starting HAART early helps a patient individually. This is “still now just expert's opinion”.

Since when did you find out about? Starting “ART's sooner to reduce reservoir”

I don't understand the mindset of ‘oh okay, you have got below 500 this time, and may be you should be on meds NOW. How about wait out and see ‘what the trends are’ specially when there are NO REAL evidences to show that starting HAART early is helpful for a patient.

When START results comes out, we can all put this to an end but till then we should not make a “clear" judgment call as to asking/advising others when to start meds based on one result set rather than looking at other important issues like trends, age, exponential viral load, kidney/liver issues etc. etc.

Enough of trying to tell members what their opinion should be . You are hijacking this thread simply to offer opinions and that is exactly what you are calling other members out for so you are not making much sense here, so please refrain from posting in this thread from now own . Thanks .

Well guys, Im totally confused about my yesterday labs, my CD4 number increased very well (516 now), but % looks like collapsed: 8%. Okey Im really ill in the last 1,5 week (fever, low fever) and I took antibiotics. The ambulance said keep calm and be back to the next lab 4 June. But I am a bit nervous...I take medicines since July 2013 (Epivir, Edurant, Viread)

I am also confused with things like my results, which at face value should mean I'm doing well, CD4 1152, 38% VL undetectable, should mean everything is a ok, but got severe illness before Xmas and another change of meds and 6 weeks in Hosp. I have a list of health issues a mile long, some related some unrelated. I feel like shit most of the time, and have got uncontrollable bowels, on and off since starting Meds. Coincidently I had to start ARTs because at the time I was in Hosp with DVT, (11month stay) my CD4 was 109, 7%, and VL above 1 million. I wish i understood what it all means, because it seams to be different for everybody. My results should be great, but I have major issues going on too.